Saturday, January 19, 2013

Wishes Come True

We have a lot of very amazing news to share. We got a call this week that Will has been granted a WISH from the Make A Wish Foundation! This is so exciting for us. The mission of this wonderful organization is to provide strength, hope and JOY for children and their families who have dealt with difficult life threatening medical conditions. They were very clear when they called that Jack will be included too. This is a great opportunity for our family to do something where the whole point is just to put smiles on our kids faces. Now, the tough part is deciding what to wish for!

Of course, for us, as Will's parents, our wishes are already coming true. Will is doing wonderfully. He is happy, growing, developing, and still seizure free. We have been keeping a log of Will's progress, and it is hard to even keep up with all the changes we are seeing in him. We have spent so much time in the past worrying about and struggling with all the things Will could not do, we think it is time to make a "Will CAN" list. Here goes...Will CAN:

Will playing with his cars

Play with toys! He never knew what to do with a matchbox car, and now he won't go anywhere without at least one of them in his hand.

Will can say all of his numbers one through twenty. Sometimes he says them in order, but he likes to skip around a bit. We think it is downright adorable when he says "eleben".

Will tells us "I love you Mommy" and "I love you Daddy" each night when we put him to bed. He said it for the first time on New Year's Eve. What a wonderful way to welcome in 2013!

Speaking of New Year's, he started saying "Merry Christmas" and "Happy New Year" about a week after New Year's. He still says these things to us all of the time.

He will proclaim "Good Night!" and quickly hide his head under the covers of his bed. He will then pop his head out and say "Good Morning!"

Will knows how to say all of the days of the week. Again, not always in order, but we don't care!

When he says goodbye to someone, he always ends it with "See you soon"

He is doing great in school, and knows the names of all the students in his class and each of his teachers.

Not only is Will saying words, he can string them together into sentences. His first sentence came when he didn't like what we were having for dinner and he looked at us and said "I want chicken nuggets".

He saw Jack yawn and repeated what Dan always says to him: "Are you tired, Jack?"

Will understands simple commands. If we tell him to go get something like his coat or his shoes, or take his dirty diaper to the trash, he can do it!

We are starting to see signs that we will be able to think about potty training sometime soon, something we once thought we might never be able to do. Will said to Kelly "I need to go potty" last week, although it was already too late!

Will is enjoying playing with toys and understands how to do it. Christmas was so much fun to watch him open up new toys and show excitement! This was the first time he actually wanted to open presents and was excited about what was inside.

When it is time to take a nap, or do anything else he doesn't want to do, he says "I don't want to!"

When we sneeze, Will loves saying "bob bless you" and he has begun fake burping just so he gets to say "excuse me".

Will knows how to take off all of his clothes. Of course, then, he loves to streak through the house yelling "Naked!!!!"

Will loves to run, jump, and even kick and throw balls. He can ride a push bike (without pedals) around the house. We went sledriding, and he kept saying "Again?"

He knows how to turn lights on and off, and always says "Turn on light?" He loves to move chairs to each of the light switches in the house and turn them all on, and he even likes to turn them back off when he leaves the room!

He says "ouch" when he gets hurt.

If he wants us to follow him, he says "Come on, (insert name here). This way."

He has memorized most of the words of his new favorite book, Goodnight Moon. He completely mumbles it and has no idea what he is saying, but he remembers what words are associated with each picture and it is adorable.

He loves to tell the dogs "Stop It!"

He also loves to sit on the dogs like they are horses.

He asks for his favorite snacks (goldfish crackers and pretzels) by name. If we don't get it for him right away, he gets a bowl out of the cupboard and gets some for himself.

He understands that his name is Will, and responds when we call him.

He can identify most of his body parts. He can point to objects in a book and say what they are.

We could go on and on, although the list is getting a bit long! The crazy thing is that he couldn't really do any of these things just 4 short months ago before his last surgery. It is difficult to even describe the changes we have seen in him in this short time, as it really doesn't even seem possible.

We have been so humbled and overwhelmed by the support, prayers, and positive energy we have received from so many people, near and far. We are so thankful, because without it, we would never be where we are today. We continue to pray that Will will remain seizure free and that he will be able to keep on learning and developing.

4 comments:

I am so happy for you all. I seriously think the world of your whole family and have been following Buster's Blog whenever I get the chance. (Only Kelly would be so organized to inform everyone in such an efficent way). But I want to tell you, from the sounds of his milestones and the progress he is making, he is doing much more than my 2 and 1/2 year old little boy. I think you are both wonderful parents and I often think of what of my mother used to tell me... She used to say, and still says, "God never gives you more than you can handle.".... Sometimes when I am struggling, I wonder how true that is.. But.. I can't think of any family that could have dealt better with such uncontrollable and tough circumstances... I'm sure it wasn't easy. And that I have no idea some of the hard times you as a family have been through. But.. I am soo happy and grateful that Will, and Jack .. have such wonderful parents... I hope to sometime reconnect and come see you all... Thanks for being amazing and I will continue to pray for Mr. Buster Beans himself... Take care. And God bless.

I am so thrilled to hear about Will's progress. I am SharonWilson (Brian's mother and Eli's Nana) and we met you shortlyafter Will's first surgery. I have been reading your blog andI am just excited to hear about Will's progress and we willcontinue to pray for him and your family. It is just amazinghow well he is doing. Love, Sharon

Hi Kelly -- I am not sure how I haven't come across your blog sooner! I am so happy to see there is ANOTHER POSITIVE blog out there!! My daughter had infantile spasms and had her first brain surgery when she was 6 months old. It's almost been 2 years since her first surgery and she is doing AMAZINGLY WELL! It seems as though our little ones had the same area of brain tissue removed!

I am so glad to have read your story and to know that there are other families out there who are proactive and spreading success stories! Our blog is www.charlieclaire.com. I am delighted for your family and for the progress your son is making! Feel free to email if you'd like norths@charlieclaire.com

Introduction

Hi, my name is Will, and I am 6 years old. I am loved very much by my parents, Dan and Kelly, my big brother Jack (age 9) and my baby brother Cole (age 2). I was diagnosed with Infantile Spasms in February of 2011. My parents created this website to keep our family and friends updated about my journey with this rare and catastrophic form of pediatric epilepsy.

After numerous treatments failed to stop the seizures (Topamax, B6 Pyridoxine, ACTH, Keppra, Vigabatrin, Depakote, and the Ketogenic Diet) doctors removed the left temporal lobe of my brain in November of 2011, which stopped all visible seizures but my development still remained stagnant. I then underwent a two stage surgery to remove my left parietal and occipital lobes in September 2012. Today, I am a walking, talking miracle and my family celebrates every seizure free day that we have been blessed with.

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